6. We met in a scenic painting class at Oklahoma State University.
We would talk of Stephen King’s Dark Tower.
We would fall in love.
7. Fred and I married, worked and played together for many years.
Fred continued his schooling and worked as video store clerk.
In 2005,
Fred would get a PhD in film studies
and would write his dissertation
About “Buffy the Vampire Slayer.”
In 1998,
Freddie III joined the family game
followed by
the littlest player Isaac in 2006.
9. Everything we ever wanted…
Resolutions January 2008:
1. Get Medical Insurance for the whole family
2. Get little Freddie into a special needs school
3. Fred gets a job in his field
4. Spend more time together as a family
5. Get a two bedroom apartment
Freddie’s
IEP Binder
10. During the months of
January, February and
March of 2009,
Status Lines…
11. On Friday March 13th, We went to the ER because Fred was in so much pain .
We waited three hours before being sent home.
12. Fred was hospitalized on March 25th 2009
for the administration of tests.
On March 27th, he was told while alone that
he had “tumors and growths.”
He was scared and confused and did not understand.
His oncologist left town for the next four days to a medical
conference and was not reachable by phone or email.
13. What was the diagnosis? What were the treatment options? Would he get a pain consult?
15. This is my husband’s medical record.
I was told it would cost
73 Centsper page
and we would have to wait 21 days to get a copy.
This document included all the things we needed to
help him including the MAR
(Medical Administration Record).
16. “She must not have tried very hard to get the record….”
Comparing access to an unpublished book by
Stephen King
to accessing the
Medical Record while hospitalized.
18. Hospital 2.
After waiting for 5 days for a transfer, we were
sent with an out of date and incomplete medical
record and transfer summary.
The new staff spent 6hours trying to cobble
together a record using a phone and a fax machine.
19. This is the
vital clinical information
from Fred’s electronic medical record.
Painted on the wall of
Pumpernickel’s Deli in
Washington, DC.
20.
21. What about the chemotherapy?
We were told an order for Sutent had been placed.
It did not come. The hospital pharmacy kicked out the order
as it was too expensive.
I would have to order it from a specialty pharmacy and have
delivered to our apartment.
This painting is “Sutent in a Shadow Box.”
It is a mixed media piece of pills & paper.
It is priced at cost in homage of the
retail price of the pills alone.
17 pills $24,285.71
22. I am trying to talk with Christine Kraft and epatient Dave.
Why did we get more help and answers from
Social Media
than from our local hospital ?
24. We fulfilled our final 2008 resolution on June 11th 2009.
We moved into a two bedroom apartment so I could care for Fred in home hospice.
He died six days later on June 17th, 2009
26. Painting Advocacy meets
Social Media
Street art is truly the first global art movement fueled by the Internet.
–Marc and Sara Schiller, Wooster Collective, 2010
27. 73 Cents.
Our story is the last thing a CVS customer
Sees as they leave the lot clutching their
pharmacy bag.
28. First the broken people spoke to me.
Then the regular people would listen.
Then I was speaking to the world.
29. I am asking you how will the
patient and patient advocate
be allowed to access the
information of (the) EMR, to
have that a standardized form,
that we all as advocates of our
spouses or loved ones, (can)
provide the best the best level
of data and catch all kinds of
errors in the medical
record?”
I Attended Free Public Meetings
June 29, 2009
30. “I applaud you for what
you (are) doing with
limited resources to try to
help your family, but I am
committed to making sure
we have a foundation
available so that clinicians
on their own and by
themselves and amongst
themselves can start to
have those kinds of
transactions captured.”
-Aneesh Chopra,
Chief Technology Officer and
Associate Director of Technology
I didn’t see patient access to the EMR addressed in his answer.
32. Testify: April 20, 2010
Access to the Electronic Medical Record: A Patient and Caregiver
Perspective Testimony before the HIT Policy Committee Meaningful
Use Workgroup, April 20th, 2010
57. The more stickers that are out there the more important it seems.
The more important it seems, the more people want to know what it is.
The more they ask they ask each other.
It gains real power from perceived power. -Shepard Fairey
62. “The thing about a hero,
is even when it doesn't look like
there's a light at the end of the tunnel,
he's going to keep digging,
he's going to keep trying to do right
and make up for what's gone before,
just because that's who he is.”
― Joss Whedon
